It has been a week since they put Idan on the higher dose of steroids for the GVHD and it seems to have done the trick. So tomorrow we will start tapering the dosage and the long road to get off the steroids. With GVHD there is always a chance that it might return when we start reducing the dose, so the doctors will be monitoring his skin closely as we cut down by 10% every 5 days or so. This means that we will have to deal with all the side effects and extra meds that the steroids come with for a couple more months. It has been hard to see Idan have mood swings and laugh or cry for no apparent reason as well as deal with his increased appetite. After a large breakfast at 7:30AM he starts asking for lunch at 10:30AM and so on. On the bright side we are getting a taste of how Idan will be as a teenager so we will be well prepared 🙂
The test poke in Idan’s arm went really well yesterday. As mentioned in our last post we cannot wait to get his central line out and based on this week’s success we hope they schedule this for next week. Amanda and I were so nervous that Idan would have a fit, or that they would need to poke him several times to find a vein that works.  We spent several days preparing him and telling him about it, even acting it out on each other. Alas, we had a great nurse, and with one poke he got the blood (and a lot of it) and our little superhero did not even flinch! So after over 100 blood draws from his central line it looks like we will finally be getting it out!
Still, it is hard to forget that we are still living in limbo and do not know if Idan will reject his graft or reach a point where his donor graft stabilizes. They will test chimerism again on March 10th and like with each of these tests before, it is a toss up and we really do not know what to expect. the good news we are focusing on is our eminent return to NYC. If tapering the steroids in the next couple of weeks goes well we can continue all our care in NYC with our pediatrician and immunologist.  We will be bringing back a  boy with an even worse off immune system, as he is still on two immunosuppressants, but we hope our life can start to return to normal. Keeping Idan safe, healthy, and happy is definitely going to be a big challenge in NYC and we hope that by the time we head back in mid-March the weather in NYC will improve.
For now we have decided that we need to get out and see Seattle a bit more in these last few weeks here as we both came to the realization that there will be no real vacations for us anytime soon. So we are going to squeeze in some more parks and sites of Seattle in between clinic visits and tests.